to love her…

10Sep

I love to hear from you crazy awesome readers. I do. It makes me happy to think that ANYthing I write would be helpful to you as you walk the journey God has placed in front of you. I mean I am just happy when I get through the day at the white-coats aren’t trying to knock down my front door to take me away to that padded room (although there are days when the padded room sounds absolutely delightful…quiet and happy meds…ahhhh).

This week, all that stuff is landing and settling into our home and our hearts. We have walked this path for 22 years and as you know there have been great highs and really low, lows. We try to take things one day at a time being mindful that there is joy in this journey and somedays that is easier to find than others.

I was able to sleep last night (thank you Advil PM) and Jerry had the night watch with Miss Courtney. After ten straight hours you would think that I would have the strength to take on the world and I did for at least the first hour I was up.

Now, not so much. Now I feel like I am standing at the bottom of a HUGE freaking mountain that must be climbed by dinner time and all I want to do is sit down and have a snack while looking up at said mountain feeling completely overwhelmed with what must be done.

I was reading an email from a sweet reader yesterday and two words leaped out at me. “Inspirational” and “resilient”. I get that a lot and I have never been comfortable with being called either. I had the opportunity to chat with an old friend and I told her how I didn’t want to be anyone’s hero. I am just like everyone else, another sinner on a journey. I told her I wanted to always be sure that no one put me on a pedestal, because when I fell off of it (and believe me I will fall off), it would hurt like hell and be humiliating as well and the language I would spout would add quite a few years to my purgatory time.

She encouraged me to look at these two words differently. To inspire is to fill (someone) with the urge or ability to do or feel something, especially to do something creative.breathe in (air); inhale. She said that’s what people mean when they say that to me. Somehow through these words in this space, I am able to get people to think differently about children with disabilities and the families that care for them. It’s a glimpse into daily life that is not offered in many spaces. Resilient means to become strong, healthy, or successful again after something bad happens or able to return to an original shape after being pulled, stretched, pressed, bent, etc. Somehow we are able to bounce back after each set back with Miss Courtney and find joy again, not without bruises and broken bones mind you but with a deeper faith and reliance on God to get us through.

I thought about that all day yesterday and then pondered it in prayer again this morning. I thought about each of you who have reached out to our family offering your prayers, words of encouragement and advice as well as love and practical help for our girl. I am inspired by you. You breathe faith, courage and hope into me and my family when we are too tired or sad to push forward. YOU do that for me and I am just so appreciative of it.

I feel like we are friends, wether we ever meet in real life or not. I share my heart and in return you share yours. It’s a beautiful balance and I am humbled each day to be considered such a source of comfort and inspiration. As for the resilient part, that’s ALL God my friends. Truly. Daily grace comes from Him and Him alone. He carries us through every moment of every day, good or bad, He is with us.

That mountain in front of me will be climbed one prayer at a time. God will climb with me and when we finally reach that flippin summit, huffing and puffing, sweat dripping down from the exertion of the climb, the joy will be overwhelming and abundant. It will be enough to motivate us to contemplate and begin the next journey toward the next mountain we need to climb.

These days are not easy ones. Miss Courtney has lost three more pounds. She now weighs 85 pounds. That’s a new low for us. Nothing diet wise has changed. Nothing care wise has changed. It just is what it is. I feel like we are grasping at thin air here for ways to help our daughter. It is difficult to realize that all that can be done now is to love her and hold her and try and make her smile.

That delicate balance that we have tried to maintain is getting more difficult to do. I cry at silly things like the thought that I won’t be buying Courtney any new fall clothing because I don’t know how long she will be with us. A stupid crazy thing to cry about but it hurts to think of a day without our girl in it. It just plain hurts.

How does one do this? Is there a book to read? A guide to follow? How does one get up every single day knowing that today might be the day your daughter goes home to God. That’s not normal, but then when has anything in this girls life been even close to normal.

I want a miracle. I do. I want to see her walk and run and laugh and say “Mommy I love you” over and over again. I don’t want to think about burial plots and funerals and no more shopping days with my girl. I don’t want to think about days of quiet without any humming or Chewbacca yells from my Courtney. I don’t want to imagine a world with that fabulous bucktoothed smile, or her legs crossed with crazy bright tennis shoes on her feet.

I can’t…I just can’t do that. If I go there, I will not return a sane woman.

My heart is breaking a little more everyday. This beautiful burden of motherhood, this beautifully difficult and joy filled blessed journey, it’s very bittersweet some days. Courtney came from me. I held her next to my heart for nine months and then for the next 22 years. That’s where she supposed to stay.

Alas, I don’t think that’s how things are going to play out for my Courtney. But then I am just a weary Mama who wants this all to change now, like right this second. I want a different ending to this story. Today it is too much for my heart to handle. Maybe tomorrow I can do it, but for today, I just want to rewind the clock a year or three. I want to go back to no seizure days and a healthier 103 pounds. To PT sessions with Miss Pam when she takes a step, or hours spent giggling while her brother reads book after book.

Unfortunately, I think we are passed those days. Today, I hold her, soothe her aches and discomfort. I g-tube feed her every 90 minutes and when she sleeps I watch her breath steady in and out for hours at a time. I cry in the dark as quietly as I can, as not to bring more worry to my son or my beloved husband because on top of all of this, his impending lay-off is looming like a black hole in front of us. Sept. 19 will be his last day at work unless we get a second miracle. So far lots of interviews, no job offers. It is hard to watch this man who has always provided foe us so beautifully be so discouraged.

It’s just exhausting to be me some days. Hell, who wants this life of worry and uncertainty?? Not I said this wimpy Christian. Not I.

What can I do about it all? Every morning, I offer my girl back to her beloved Savior who she will spend an eternity dancing with and singing at the top of her lungs. Whenever the Lord decides to bring Courtney home will be a beautifully horrible day. One filled with the horrific ache of a mothers empty hands but overflowing heart of a mother’s gratitude for the One who allowed us to love her and care for her these past two decades. As far as Jerry’s impending unemployment, I had that to St. Joseph and Jesus. They make a pretty good team.

Right now there is another g-tube feeding to give, another story to read, another DVD to watch and snuggle with her. Courtney is the resilient one. Courtney is the inspiring one. She is love and only love.

I am blessed beyond measure with the privilege of loving my Courtney through it all. I am blessed beyond measure to be loved by a man who refuses to quit no matter what. I am blessed beyond measure to have a son who is so willing to sacrifice for the sake of his sister and his parents. I am blessed indeed.

Oh, Mary! My heart aches for you. I only had Rebecca six days and it was so hard to let her go. I know the pain will be deep when you have to say goodbye to Courtney but I also know you will get through it just like you do now – with God's great grace, mercy and love.

So do not fear, for I am with you; do not be dismayed, for I am your God.I will strengthen you and help you; I will uphold you with my righteous right hand. – Isaiah 41:10

Praying for you. So I know I should share the perfect bible quote, but when I saw your title, "To love her," I immediately thought of a Fleetwood Mac song called "Bleed to Love Her." It's a guy/girl love song, but something about the melody and the first two thirds could apply to a daughter. (The last verse wouldn't of the song wouldn't apply so I won't include it.)

Once again she steals away/Then she reaches out to kiss me/And how she takes my breath away/Pretending that she don't miss me

Oh…i would bleed to love her/Ooooh…bleed to love her/Whoa…i would bleed to love her